An investigation into the treatments of CFIDS/ME, called the Gibson
Inquiry, has recently been concluded by a Parliamentary Committee in
England. One of the staunch psychobabblers, Trudy Chalder, testified
that cognitive behavioral therapy (CBT) "works for chronic pain, chronic
diseases i.e. rheumatoid arthritis, cancer, irritable bowel
disorders...to name but a few." I wish I my my friend who recently died
of cancer knew this! Why isn't it promoted as a treatment for any of
the other ailments? Chalder has conceptualized CFIDS/ME to show factors
that predispose the person making them vulnerable, factors that
preceded their current period of unwellness and the factors that
maintain it. An essay by her considers it quite probable that a virus
is involved as an initiating factor but, intead of taking past science
into consideration, they ignore more than 4,000 articles. Immune
abnormalities were being found and published upon in the 1980's and the
authors include some who have found it more profitable to join the
psychobabble field ("Immunological abnormalities in the chronic fatigue
syndrome," Lloyd, Wakefield, et al.) Their references merely include
other psychotherapists and tell you that a composite patient with
CFIDS/ME has a perfectionist personality, an abusive or absent father
who was sexually abusive along with a needy mother. It sounds
distinctly like what the CDC's William Reeves has adopted as his new
criteria. For those older, they experience a death of a husband
followed by a virus and now "rests" instead of working at a job. Public
income support permits this person to continue her "sick role."

To be perfectly honest, there are actually two types of CBT. One
respects that a disease has occurred that has no real treatment and helps
a patient "cope" with their new, closely restricted lifestyle dictated
by this disease. The other type is based upon the thinking that one's
illness is due to the wrong way of viewing their lives or of past bad
experiences. One survey done by the 25% ME Group found CBT was the
treatment that was the most unhelpful one offered with only GET (Graded
Exercise Therapy) getting worse results. These are the two treatments
suggested by our own Centers of Disease Control and Prevention (CDC).
Both are unproven and GET has been proven to actually be harmful to
patients that result in relapses that have been found to last weeks,
months, or even years.

Blaming the patient has always been the easy way out. Indeed, when
the much publicized Incline Village epidemic occurred, it was referred
to as the "yuppie flu" despite many becoming sick that were not in the
category of rich, vacationing tourists. The CDC refused to take the
outbreak seriously although many of these original patients remain
severely sick and several have joined our Memorial List. In fact, this
whole perception of a typical personality can be seen in recent comments
by William Reeves about an abusive childhood which were translated into
an article by Mary A. Fischer in The Oprah Magazine when past soccer
star Michelle Akers now attributes her illness to "some difficult family
challenges" and the CDC's Suzanne Vernon promotes this theory by saying
"Early life adverse events...can really mess us up and change the
architecture of the brain." Where is the evidence of this? Why don't
most patients fit the "typical" scenario?

CBT is pseudoscience. While it may look like science, it has no
scientific implications whatsoever. A recent book by William Epstein
from the University of Nevada explains that "CBT, like all of
psychotherapy, is more akin to the mysticism of the mind-cure and faith
healing than to clinical science...the theory has a contrived, ad hoc
quality...it relies on very uncertain discordant research that only
allows box-score summaries of 'many studies' or of 'most research' or of
'most evidence'..."

What does this have to do with the CFIDS Association of America (CAA)?
Well, the CDC has used their vast powers of public relations to hold
press conferences and get their stories widely distributed in magazines
such as The Oprah Magazine and the physicians interviewed in all these
stories have close ties to the CAA. And. of course, the CDC funds the
CAA for big bucks annually.

And they brag about it. From a 2002 Annual Report of the CAA called
"Putting CFIDS First", the CAA brags that "the Association and The
Sheridan Group (their lobbyists) worked closely with CDC officials
including Dr. William Reeves and report "in collaboration with Emory
University researchers, CDC is supporting a separate study using
functional magnetic resonance imaging (fMRI) to examine changes occurring
in the brain over time..." Did you read the results? They were buried
as the CDC now admonishes all physicians that any brain tests are
"experimental."

The CAA brags about how much money they spend on research but,
there is no follow-up and no publications that we could find that result
from any of the recently funded work going back quite a few years. The
funding is disjointed and the rhetoric is full of promises that never
materialize. In this 2002 report, the CAA funded two researchers. One,
Theodore C. Friedman, M.D., got $155,000 to look at a possible cause of
the decreased blood flow to the brain by examining if renin, a hormone
made in the kidneys, is responsible. We could find no follow-up to this
work published anywhere and it's now 2007. Another researcher, Giris
Jacob, M.D., from Israel, got funded to look at patients in the very
early stages of CFIDS/ME. What did he find? No follow-up paper was
published nor did the CAA let its members know of any results. And
these were the only two researchers funded that year. They claim the
work they fund brings "hope" to patients but, if it does, the patients
are being fooled. It is much like the promise of CBT and the hype to
promote it. There's no foundation to base it upon. In fact, it is
cruel and abusive to patients. By ignoring scientific findings and by
not publishing results, the wrong theories can be funded over and over
again. Whether the results are good or bad, withholding these findings
do more harm than good.

But wait, there's more! The CDC, from the year 2000 to 2003, has
had committee meetings to change the definition of CFS in order to make
it a mere psychological fatiguing illness and to bypass the much more
stringent 1994 research criteria that physicians have relied upon. They
published a paper in 2005* that watered down "CFS" and eliminated any
thought of it actually being M.E. This committee was called the
International CFS Study Group and it defined "CFS" by testing 227
patients of whom only 70 had been diagnosed as having CFIDS/ME.
Basically, they separated those "fatigued" from those not "fatigued"
while they pretended to be in search of standarized criteria. Of
course, there is no marker yet for this disease so they were able to get
away with this. And who were the members of this committee that has
tried valiantly to push back the actual science by decades? Well, many
psychobabblers including the "king" of psychobabble, Simon Wessely and
quite a few of his cronies. Canada's most famous psychobabbler, Susan
Abbey, participated along with close to another 40 others. Some of the
names of this committee may surprise you such as K. Kimberly Kenney
McLeary (CAA), Nancy Klimas, Benjamin Natelson, and Leonard Jason while
others you fully expect such as the CDC's William C. Reeves, Suzanne
Vernon, along with four others from the CDC.

So now you may understand why any research that comes out of the
CDC is quite bogus. They are not actually using people who have met the
CDC Research Criteria but are, instead, using an even less stringent
version created by this committee that met a few times a year for a few
years. The gene study that is receiving the greatest PR treatment known
yet is an outcome of this new classification. What it means is that the
research means absolutely nothing and those who are joining the chorus
promoting and hyping it are doing none of us any favors. Without the
fanfare of psychobabble known in other parts of the world, the CDC has
managed to demote CFS to a wastebasket category. The Wichita hospital
stay used in their highly touted surveillance study included only six
patients that fit the Fukuda criteria and those that failed the Romberg
Stance were excluded even though experts advise using it along with the
Canadian clinical criteria.

Is anyone listening? A lead story from the American College of
Physicians was titled "The Patient wtih Medically Unexplained
Symptoms." The author, Mark Feldman, M.D.. is from the Presbyterian
Hospital of Dallas. The first sentence of his paper includes a
reference to an article in the Lancet from 1999 by Simon Wessely et al
(354:936). To remind you, Wessely said, in 1994, "I will argue that ME
is simply a belief that one has an illness called ME." In case there is
any doubt that he is including CFIDS/ME, his second sentence names just
a few of these including "fibromyalgia, tension headaches, irritable
bowel syndrome, nonulcer dyspepsia, atypical and non-cardiac chest pain,
chonic fatigue syndrome" and many more. What seems most important to
him is that "the medical and economic impact associated with the care of
these patients is staggering." He suggests that "enlightened
specialists" find the diagnostic criteria is not specific so he implores
all that belong to the American College of Physicians to try all on
antidepressant medications along with cognitive behavioral therapies, to
minimize their referrals and to regard all these "functional
syndromes as a group of closely related disorders, rather than splitting
them into multiple disorders of unknown cause." This is the key stragedy of the
CDC. If they group all these illnesses together, they ensure
obscurity. While they tout their national tour to educate others with
"The Faces of CFS" and other nonspecific entities, they pretend to care
while they encourage no testing and, in that way, not only ignore all
science but advise against it on their website. The director of the
CDC, Dr. Julie Gerberding, again mentioned the "groundbreaking new
research" that made patients "not being able to cope with
...psychological...challenges." She bragged about "our partners,
including the CFIDS Association of America."

The CDC seems determined to catch up to the psyhobabble it has
encouraged in the United Kingdom. The draft guidelines from the UK's
National Institute of Health & Clinical Excellance (NICE) issued this
fall clearly extol CBT and exercise as the favored treatments as does
the CDC. Many who contributed to the watering down of the new
definition used by the CDC have contributed, as well, to the NICE
guidelines that list ME (and CFS) under "Functional or Psychosomatic
Disorders: Medically Unexplained Symtpoms." Their direction could not
be made more clear.

Just one week after the CAA/CDC held their press conference saying
"CFS is a real disease," headlines from coast to coast shouted that
childhood trauma was a real risk factor for CFS (Archives of General
Psychiatry, Nov. 2006). Marcia Harmon, an employee of the CAA, told
patients online that the press conference was "a triumphant success."
When patients complained about the newest headlines in the study funded
and done by the CDC, she posted to patients on an online announcement
group that the study had "important limitations" and that the lead
author is "no longer affiliated with the Centers for Disease Control and
Prevention's CFS Research Group." But those reading it all over the
United States and Canada were left with the information that "early
adverse experience" is a "risk for CFS" in a study by the CDC and Emory
University. The author of the acclaimed historical novel on CFIDS/ME (Osler's
Web), Hillary Johnson, posted on that same online group to inquire if
Harmon also was "using the CFIDS org's finanical oomph to disseminate a
press release to the media that explains the absence of rigor in this
research...the story appeared unchallenged on Web.MD less than a week
after the press conference." Ms. Johnson went on to say, "In past
years, certainly, epidemiologists at the Centers for Disease Control
have had few reservations about jumping all over published research
indicating a biological basis for 'chronic fatigue syndrome,' even when
leveling ad hominem attacks against the authors when they felt so
inclined. If the agency has switched course, and is now determined to
validate the suffering of 'cfs' patients and enhance recognition of the
seriousness of this reputedly grossly under-diagnosed disease --- which
they recently discovered has a biological basis --- shouldn't the CDC
and its pubic relations contractors also be ready to pounce with equal
enthusiasm, all over research that undercuts their own newfound thesis?
Or does it? As the headline of Medical Condition News said, "Chronic
fatigue syndrome begins with childhood trauma and stress. Does that
bolster the gene study that cited an inability to handle stress as one
highly expressed gene that was never verified via PCR testing? On the
other hand, shouldn't that be a critical element of their 'campaign'?"
We have to agree with the author that some of that $4.5 million spent on
their public awareness campaign could have gone toward getting out more
of the truth instead of continuing to pat each other on the back on how
gullible the media is in this country, especially when this newest CDC
study was in the news just days after the CAA asked patients to send "a
message of gratitude to Dr. Gerberding", the CDC's director. The medical
community did not hear about the press conference but they were given
the information that the illness "begins with childhood trauma and
stress" and one online medical group put this under the category of
"anxiety and phobias."

We admit we were remiss in sending that "message of gratitude to
Dr. Gerberding. Instead, we want to thank you, National CFIDS
Foundation, for hearing a different drummer and focusing on real
research for a very real disease. You are our beacon of hope and we
depend upon you to remain truthful.